Blog > The Little Boy with the Monkey: In whose best interest? Commentary on the case of Charlie Gard

Introduction

The image of the little boy with the monkey dominated all media platforms from mid-April 2017 until his death in late July at 11 months of age. The little boy is, of course, Charles Gard, known affectionately as Charlie. Charlie’s fame arose out of the legal battle that occurred between his parents, Christopher Gard and Connie Yates, and Great Ormond Street Hospital (GOSH), in whose care Charlie was entrusted.

This case forms one of an ever-growing list of headline cases[2] in which parental and medical opinion clash, in relation to the provision or withdrawal of treatment to dying children. This commentary looks at why this is becoming the norm amongst high-profile cases and argues how such a position is harmful to the child in question. Following on from this discussion, I assess how defensible court intervention and the best interest test is, and lastly discuss the innovative, yet unsuccessful ideas of counsel for Charlie’s parents as displayed in the Court of Appeal hearing.[3]

Facts

Charlie was born in August 2016 as an apparently healthy baby boy. However, Charlie’s parents decided to seek medical advice when Charlie’s weight ceased to increase as expected. He was admitted to his local hospital and then transferred to GOSH. It was discovered that Charlie suffered from a rare inherited mitochondrial disease called infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). This fatal disease resulted in Charlie’s ‘brain, muscle and ability to breathe [being] severely affected’.[4] Due to the impact on his breathing, it became apparent that Charlie could not successfully breathe independently. Therefore, he was placed on an artificial ventilation machine. This forms the point of contention; Charlie’s treating clinicians at GOSH believed that Charlie’s ventilation should be withdrawn to allow Charlie to die with dignity, whereas his parents firmly disagreed. They sought out different treatment options and became fixated upon the possible benefits of nucleoside treatment for their son. Thus, the treating hospital applied[5] to the court to make numerous orders in relation to Charlie such as ‘that it is lawful, and in Charlie’s best interests, for artificial ventilation to be withdrawn’[6] and ‘that it is lawful, and in Charlie’s best interests, not to undergo nucleoside therapy’.[7]

Legal issues

Quite simply put, the court needed to assess what was in Charlie’s best interest and to decide whether to grant the orders sought by GOSH.

Appellate history and legal conclusions

Although I focus on the initial High Court judgment of Francis J and the Court of Appeal judgment, it is worth setting out the full appellate history of this case. Francis J, sitting in the High Court (11 April 2017)[8] with ‘the heaviest of hearts but with complete conviction’,[9] granted all orders sought by the treating hospital. Charlie was to be allowed ‘to die with dignity’.[10]

However, Charlie’s life and his parent’s legal battle did not end there. His parents appealed Francis J’s judgment and sought to reverse the judge’s findings on points of law in the Court of Appeal (23 May 2017).[11] McFarlane LJ, giving the leading judgment, dismissed the appeal. The parents once again appealed the decision; however, the Supreme Court refused permission to appeal (8 June 2017).[12] Charlie’s parents also sought assistance from the European Court of Human Rights, arguing infringements of their Article 6 and Article 8 rights under the European Convention of Human Rights. Such arguments failed to assist the parents (27 June 2017).[13]

Charlie’s case returned to the High Court on the 10 July 2017 and the judgment was handed down on the 24 July 2017.[14] In this new hearing, Francis J was called upon to assess new medical evidence presented by Charlie’s parents. Before the court could finish its assessment of the new medical evidence, Charlie’s parents decided it was in the best interest of Charlie to agree with GOSH and to cease the aid of artificial ventilation following the most recent MRI scan of Charlie’s muscles and tissue, which showed that ‘Charlie’s life cannot be improved’.[15]

The case came to court for the last time on the 27 July 2017[16], in order to clarify the arrangements in relation to Charlie’s death. The position statements for GOSH revealed Charlie’s parent’s intentions; they ‘want him to be with them and ventilated at home for several days before receiving palliative care’[17]. GOSH could not support such requests, due to an array of obstacles. The option of allowing Charlie to die in a hospice was adopted with Francis J deciding that treatment would cease shortly after Charlie had arrived at the hospice[18]. It is unknown exactly how long after the removal of treatment Charlie died, but it is known that he died the following day on the 28 July 2017 in the presence of his parents.

Comment

The relationship breakdown between Charlie’s parents and the medical team treating Charlie is not rare in the cases that hit the headlines and garner strong feelings for both sides of the argument. It is becoming a trend not only specifically in relation to this area of medical law, but medical law in general. De-medicalisation arguments and anti-patriarchal feelings towards the medical profession as a whole is gathering more and more support.[19] These sentiments combined with the prominence of consumerism within the provision of healthcare, following the ‘deregulation and privatisation’[20] of healthcare services has created a breeding ground for disagreements between the “consumer” and the doctors in charge. The supposed shift in power ‘implies a capacity for independent decision-making’[21] and thus it is argued has made us increasingly demanding in relation to our own healthcare and the healthcare of our loved ones. Add to the mix the role of the World Wide Web. Once Charlie’s parents sought out alternative treatments, the online accounts of children similar to him surviving with alternative, radical treatments became the fuel to the fire that was the disagreement between the parents and the doctors.

The ‘partnership’ approach as advocated by Lord Donaldson in Re J,[22] which desires the ‘joint decision’[23] making of the parents and the medical team, is the ideal we should strive towards and is attained in the majority of cases. As Jo Bridgeman comments, the parents of seriously ill children and the medical team caring for their child ‘are mutually interdependent in the shared endeavour of securing the best possible outcome for the children’.[24] However, in these cases, perched perilously on the boundaries of medical possibility and of life and death, is it naïve to think that a positive partnership is attainable? Once cases get to the point that Charlie’s did, positions become entrenched and polarised, and even more so when public support reaches fever pitch[25]. Indeed in relation to the latter, it seems the public latched onto this case with Francis J noting the ‘contributions’ of those ‘who know almost nothing about this case but who feel entitled to express opinions’[26].

This is where court intervention becomes paramount. As Francis J stated, ‘…although parents have parental responsibility, overriding control is by law vested in the court exercising its independent and objective judgement in the child’s best interests’.[27] The key words in this latter quote are ‘independent’ and ‘objective’. The court is focused solely on what is best for the child in light of all the evidence. The courts apparent objectivity can be compared with the subjectivity of the parents. Such subjectivity can sometimes blind the parents to what is really in their child’s best interests. The possibility of parental subjectivity being an issue was most famously discussed in Re MB,[28] where Holman J cautioned courts to ‘be mindful that the views of any parent, may understandably, be coloured by their own emotion or sentiment’.[29]

More recently, this seems to have been the case in regard to Charlie. This is not a criticism of parents; however, it can be seen as detrimental to the position of the child. Indeed, Antje Pedain comments that there is an ‘ever-present possibility that parents may perhaps unconscionably define their child’s best interests in terms of their own’.[30] Such a conflation of best interests is potentially dangerous for the child and this is why an objective assessment of the child’s best interest is so important. This viewpoint has become increasingly under attack from those who advocate for the prevalence of relational autonomy arguments and for the prominence of parental preferences. Bridgeman highlights the benefit we can gain from the ‘unique position’[31] of the parents which award them special ‘insights into the quality of life of their child’.[32] Indeed, in the case of Charlie, his mother ‘spent some 3,200 hours’[33] with him since his birth. I agree that parents can offer a vital dimension to discussions relating to their child, especially in light of the shared decision making model we are striving for. However, once a point arrives where it objectively looks like the parents’ wishes are not in the best interests of the child, their wishes must give way. The child needs to remain the focus of the case.

Criticism levelled at judicial interference in such circumstances is prominent both amongst public opinion and also within academic circles. Academic criticism is aimed mainly at the use of the best interests test to which I now turn my attention. The best interests test is deeply ingrained in UK medical jurisprudence and especially in relation to incapacitous individuals such as children. The principles that guide the test utilised by the judiciary have evolved over time, but are most succinctly set out in the case of Re MB.[34] In this case, Holman J set out 10 key principles in assessing what is in a child’s best interest, in relation to medical treatment. Worthy of restating here is point five of his list: ‘…best interests are used in the widest sense and include every kind of consideration capable of impacting on the decision. These include, non-exhaustively, medical, emotional, sensory (pleasure, pain and suffering) and instinctive (the human instinct to survive) considerations’.[35] Therefore, medical considerations form part of a wider concept of best interests, and social factors are also apparently significant.

This is where one of the key criticisms of the best interest test lies: the potential for judicial deference to medical opinion. Support for the prevalence of parental opinion highlights the lack of focus by the courts on the ‘experience and knowledge of parents’.[36] In relation to Charlie, should we assess whether Francis J gave appropriate weight to non-medical perspectives of best interests? In a section of the judgment entitled ‘The Position of the Parents’, Francis J sets out the parents’ contentions with the medical opinions of GOSH staff. In summary, he found that ‘the parents do not accept that Charlie is as bad as reported by the medics in the case’.[37] The parents then sought to utilise emotional and sensory arguments, such as Charlie’s fathers’ contention that ‘Charlie tries to open his eyes more and hold his hands and will know who they are’.[38] Charlie’s mother argued that ‘Charlie responds to her, that he can feel pleasure, that he enjoys tickles’.[39] Such arguments stood in stark contrast with the vast body of medical opinion, and it is unrealistic to ever think they would convince the court.[40] Consideration of non-medical best interest evidence should be required of the courts, and could be vastly influential on the judgment, but only when it is warranted. The courts will always focus on the best interests of the child and will be wary of emotional arguments simply made out of hope.

Yet it remains that the best interest test is not supported by all, with the denial of parental opinions in the assessment of best interests causing displeasure. The state of the law in this area has led the well-known medical law scholar Margaret Brazier to question whether the best interest test is becoming ‘an even emptier mantra’.[41] It is therefore unsurprising that counsel for Charlie’s parents sought a way to disallow the use of the best interest test in relation to Charlie.

In the Court of Appeal hearing of Charlie’s case, Mr Gordon QC for the parents contested the High Court ruling by Francis J on a variety of bases, but worthy of note is his creation of a ‘bespoke subcategory to which a different test might apply’.[42] Mr Gordon QC submitted that ‘there are two distinct categories of cases relating to the medical treatment of children’,[43] what he went on to class as Category 1 cases and Category 2 cases. In relation to Category 1 cases, ‘the legal test to be applied is the conventional, and now well settled, “best interests” test’.[44] Controversy surrounds the creation of Category 2. Cases falling within this class must meet the criteria that the parents have put forward ‘a viable alternative treatment option’[45]. In such cases, ‘the parents preferred treatment option should only be overridden if it is established that the pursuit of that option is likely to cause the child to suffer significant harm’.[46] Only one past case would, in Mr Gordon QC’s eyes, have fallen alongside Charlie’s in Category 2, the well-known case of Ashya King.[47] The Court of Appeal rejected this legal argument, with McFarlane LJ highlighting the basic principles underlying the ‘established yardstick’[48] of the best interest test.

It can be hypothesised that Mr Gordon QC’s approach will be considered by some academics seeking ‘the move towards greater deference of the courts to parental preferences’.[49] However, would it have improved the state of the law if it had been accepted in the Court of Appeal? I doubt that it would have. It would have merely added to the combative dimensions of these cases. Furthermore, would it not unfairly lengthen the life of the child whilst the parents seek to prove their route is viable, as was the case with Charlie? It would once again unfairly shift the focus from the dying child to his or her parents. The best interest test, when applied correctly, is very capable of protecting the child in question. It allows the child an ‘independent, reasoned and principled assessment of their welfare’,[50] something Charlie was afforded in every court his case was heard.

Conclusion

Since the mid-20th century, we have witnessed unparalleled medical advancements in matters of life and death. These achievements come at a cost, however. At what point does being completely dependent on a machine for life cease to match our concept of having a meaningful life? Following the evidence discussed in relation to this area of law, in light of Charlie’s case, I believe the courts are best placed to step in to say when ‘enough is enough’, with the use of their steadfast, objective best interest test. I fully appreciate Bridgeman’s comment that ‘the effectiveness of the law in this area can be assessed by the extent to which it fosters the relationship between those working to care for the child’.[51] This is clearly what happens in uncontroversial cases that never reach the courtroom, but rather are decided on the wards between parents and doctors as a united team. But in the case of Charlie and other past headline cases, is such a criticism of the law fair? In Charlie’s case, I think the court fulfilled their duty to the little boy with the monkey.

Postscript

The importance of objectivity in relation to analysing the law is indisputable. Such objectivity as exercised by the courts, especially in medico-legal ethics cases such as this, should be praised. Whilst writing this commentary, it became apparent that being a medical ethicist brings with it a constant contradiction of objectivity and subjectivity. How is it possible to be an ethicist without possessing a certain view on issues of life and death? Our past and current experiences influence who we are and thus the views we possess and the views, like it or not, will flavour every academics’ and even judicial interaction with a case.

[1] Isabelle Le Gallez is reading for an LLM in Medical Law and Ethics at the University of Edinburgh, having graduated from the University of Sussex (LLB Honours). Correspondence: s1774482@sms.ed.ac.uk.

[2] See cases such as NHS Trust v SR [2012] EWHC 3842 and In the Matter of Ashya King [2014] EWHC 2964.